Entries in Baby Boy (15)
Leighann
I have struggled lately wondering if I am in denial over baby boy. I shared before that I feel God challenged me a week or so after getting the initial news to trust that he WILL heal this baby, not only that he can. This is a hard thing to do. It's hard to say you 'heard' from God; that he's telling you something that will happen in the future. No one wants to misread God, or attribute our wishes as a message from God. It's not only highly embarrassing, but extremely disappointing. So, I go back and forth wondering if I'm understanding the Holy Spirit or if I should have a plan for baby boy's passing - you know, just in case. I verbalized this to Henry last night, saying I didn't want to be naive, or unprepared (yes, I'm a huge control freak!). He encouraged me to keep believing my gut feeling - that God will heal the baby.
I've also cried out to God in the last week or more, where are you? are you still speaking to me? am I understanding you correctly? what are my next steps? Nothing but silence on the other end. It's frustrating because I really felt God speak to me several times in the first 10 weeks after diagnosis. It seems since our initial visit to Children's, I've become more confident in the medical community stepping up to the plate and have depended less on my faith reaction. I don't want that. I want to know God is still there; listening, taking part, etc. So, I've really been asking for clarity and judgment.
This morning, I was rushing around trying to get more things done than possible and I turned the radio on in my car while running my errands. A Seventh Day Adventist service 'happened' to be airing. The minister was quoting a negro spiritual that says, "Don't wait until the battle is over, shout now for you know you're gonna win." He went on to say that God is in control of our trials, that we don't have to wait until the trial is over to praise His name, because we are guaranteed to win.
I really felt a peace come over me, like God was again reaching down and communicating to little ole me. I don't have to fear the outcome of this pregnancy. God is in control. No matter the outcome, it will be a win for me. God's plans for us are always good in the end, whether it seems that way in the circumstance or not. I aslo took it as a confirmation that God will heal this baby. Does this song always mean the outcome is the 'best' in human terms? No, not necessarily. But I've heard many things over the last few weeks that could pertain to my circumstances, but none struck a cord in my spirit like this one did. It's hard to explain. I wanted to record this so I can look back and remember. So I can be thankful for a God who hears our cries and tells us to cast every care on Him.
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Leaving the house before the crack of dawn - literally - is not my idea of fun. Who ever thought of starting a procedure before the sun is awake needs to have their eye lashes plucked out one at a time for punishment. By the time my MRI started at 7 a.m., I was feeling nauseous from being on the move so early in the morning. I'd eaten breakfast and then a granola bar while waiting to be called back. Can they see food in your stomach in MRI pictures? I thought the same thing when I ate a bite-sized snickers during the ultrasound.... oh well, just wondering.
If you've never had an MRI, the machine itself sounds like a washing machine on steroids with a jackhammer thrown in for good measure. When they take the pictures, you hear clicking noises accompanied by various fire-alarm like buzzers. The worst thing of course if being rolled into the tiny tunnel. When they first rolled me in, half my head was still sticking out of the machine. I thought, 'this isn't bad. If they had rolled me any further I think there would be a problem.' No later than having thought that, the conveyor belt started up again and they rolled me completely into the tunnel into final position. I have claustrophobic tendencies, especially about having fresh air to breathe, so I really had to employ mind over matter to get through without panicing. An hour and a half later, I was allowed to move on to the ultrasound.
The day over all was great for me. I had a bunch of tests in the morning where I basically layed on a table and let people look at the baby. I was elated that baby boy has a sternum, and his lungs and chest cavity are in great condition. It was also encouraging to hear the surgeons not only have experience with this defect, but also feel confident in the outcome. We're just waiting to see what this little heart is going to do. Like I said on the main page, God is control of this outcome. Whether the baby lives or dies, He is our hope and strength. It's weird to be sitting here having a plan in place, with top doctors in the field, to give this baby a chance when we were told 13 wks ago this baby had ABSOLUTELY NO chance at life. Not only after birth, but also before....that the pregnancy would spontaneously end itself. That a baby with its heart outside its chest just doesn't live. We are now being told the opposite by surgeons who have seen children not only live, but thrive once having their hearts put back in place. We found out 13 wks ago our baby was dying and now we have 13 wks until he is born and proves the OB specialists wrong. Half-way there, babe....half-way there.
I go to Children's tomorrow for the fetal MRI, another fetal ECHO and sonogram. I'll let everyone know what they say.....
Last night on ER Angela Bassett's character said the following:
When you lose your parents, you're an orphan. When you lose a spouse, you're a widow. When you lose your baby....there's no word for that.
"For though I walk through the valley of the shadow of death, I will fear no evil for thou art with me." Ps. 23:4
This is the verse I thought of tonight while putting Natalie to bed. It just came to me out of the blue. My doctor's appointment with the OB specialist on Friday was ordinary. Nothing new to report - baby still growing, heart still outside chest cavity.
I met the last of the four doctors in the practice. They each have their own style. He kept his advice to himself. I'm not sure if this is because I just got passed off to Childrens and they are now my 'advisors' or if this is his general style. He basically confirmed I wanted to go forward with the pregnancy, then asked me what Children's told me. I gave his the update and mentioned while they were optimistic, they weren't giving us any guarantee or giving us even a 50% chance at life. We had a very interesting conversation that went something like this:
He commented that this type of defect is devastating and he's seen three all with bad outcomes.
I asked "is that because the mothers terminated the pregnancy or because the babies died of natural causes?"
He said "both"
Me: "I wonder if that skews the statistics then."
Him: "Maybe. The experiential advice doctors give mothers on this defect is from what they know from 30 years ago before we would find out about the defect in the womb. The baby would basically be born, the defect would become apparent and there would be no plan in place to immediately help the baby. Without immediate help, the baby cannot live."
Me: "So, purely antidotal, do you think this is something modern medicine will be able to one day overcome more regularly?"
Him: "I don't see why not. Technology and medical science is developing at a rapid pace. We are doing amazing things now. I don't see why it wouldn't get better."
This conversation seems benign, but I couldn't stop thinking all weekend how the doctors are being a bit deceptive with the mothers. While this condition does result primarily in death, there is some chance the baby will live. That is what Children's is telling us and what they have seen. Starting at our 12 wk NT scan and up until we met with Children's, we were told by our doctors and specialists that this baby had NO chance at life; that they didn't expect life to 20 wks and when we beat that, that while we might go to 40 wks it would die at birth. I don't want to be in denial, but it seems to me that working on statistics from 30 years ago gives mothers a skewed idea when making a decision to terminate or not - skewing the death rate a bit more. Any hesitation on the doctor's part might make all the difference of a mother carrying to full term and giving a child a chance at life. I know this isn't where I should focus my energy at the moment, but it's been hard to get out of my head.